Observational Study
Copyright ©The Author(s) 2019. Published by Baishideng Publishing Group Inc. All rights reserved.
World J Gastroenterol. Oct 14, 2019; 25(38): 5862-5882
Published online Oct 14, 2019. doi: 10.3748/wjg.v25.i38.5862
Quality of life, work productivity impairment and healthcare resources in inflammatory bowel diseases in Brazil
Rogerio S Parra, Julio MF Chebli, Heda MBS Amarante, Cristina Flores, Jose ML Parente, Odery Ramos, Milene Fernandes, Jose JR Rocha, Marley R Feitosa, Omar Feres, Antonio S Scotton, Rodrigo B Nones, Murilo M Lima, Cyrla Zaltman, Carolina D Goncalves, Isabella M Guimaraes, Genoile O Santana, Ligia Y Sassaki, Rogerio S Hossne, Mauro Bafutto, Roberto LK Junior, Mikaell AG Faria, Sender J Miszputen, Tarcia NF Gomes, Wilson R Catapani, Anderson A Faria, Stella CS Souza, Rosana F Caratin, Juliana T Senra, Maria LA Ferrari
Rogerio S Parra, Jose JR Rocha, Marley R Feitosa, Omar Feres, Department of Surgery and Anatomy, Ribeirao Preto Medical School, University of Sao Paulo, Ribeirao Preto, SP 14049-900, Brazil
Julio MF Chebli, Inflammatory Bowel Disease Center, Federal University of Juiz de Fora, Juiz de Fora, MG 36036-247, Brazil
Heda MBS Amarante, Hospital de Clinicas da Universidade Federal do Parana, Curitiba, PR 80060-900, Brazil
Cristina Flores, Hospital de Clinicas de Porto Alegre, Porto Alegre – RS 90035-007, Brazil
Jose ML Parente, Universidade Federal do Piaui, Teresina, PI 64073-500, Brazil
Odery Ramos, Hospital de Clínicas da Universidade Federal do Parana, Curitiba, PR 80060-900, Brazil
Milene Fernandes, CTI Clinical Trial & Consulting Services, Lisbon 1070-274, Portugal
Antonio S Scotton, CMIP Centro Mineiro de Pesquisa, Juiz de Fora, MG 36010-570, Brazil
Rodrigo B Nones, Hospital Nossa Senhora das Gracas, Curitiba, PR 80810-040, Brazil
Murilo M Lima, Hospital Universitario da Universidade Federal do Piaui, Teresina, PI 64049-550, Brazil
Cyrla Zaltman, Carolina D Gonçalves, Isabella M Guimaraes, Universidade Federal do Rio de Janeiro, Rio de Janeiro, RJ 21941-913, Brazil
Genoile O Santana, Universidade do Estado da Bahia, - Salvador, BA 41150-000, Brazil
Ligia Y Sassaki, Rogerio S Hossne, Department of Internal Medicine, Botucatu Medical School at Sao Paulo State University (UNESP), Botucatu, SP 18618-687, Brazil
Mauro Bafutto, Instituto Goiano de Gastroenterologia e Endoscopia Digestiva Ltda, Goiania, GO 74535-170, Brazil
Roberto LK Junior, Mikaell AG Faria, Kaiser Clinica, Sao Jose do Rio Preto, SP 15015-110, Brazil
Sender J Miszputen, Escola Paulista de Medicina, Sao Paulo, SP 04023-900, Brazil
Tarcia NF Gomes, UNIFESP, Disciplina de Gastroenterologia, Sao Paulo, SP 04040-002, Brazil
Wilson R Catapani, Faculdade de Medicina do ABC, Santo Andre, SP 09060-870, Brazil
Anderson A Faria, Stella CS Souza, Maria LA Ferrari, Faculdade de Medicina UFMG, Belo Horizonte, MG, 30130-100, Brazil
Rosana F Caratin, Juliana T Senra, Takeda Pharmaceuticals Brazil, Sao Paulo, SP 04709-011, Brazil
Author contributions: Parra RS, Chebli J, Amarante HMBS, Flores C, Parente JML, Ramos O, Fernandes M, Scotton AS, Zaltman C, Santana GO, Sassaki LY, Bafutto M, Junior RLK, Miszputen SJ, Catapani WR and Ferrari ML provided substantial contributions to the concept and design of the study; Parra RS, Chebli J, Amarante HMBS, Flores C, Parente JML, Ramos O, Scotton AS, Zaltman C, Santana GO, Sassaki LY, Bafutto M, Junior RLK, Miszputen SJ, Catapani WR and Ferrari ML contributed for the acquisition of data; All authors contributed to the analysis and interpretation of data, revision of the manuscript for important intellectual content, granted final approval of the version to be published and agreed to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
Supported by Takeda Pharmaceuticals Brazil.
Institutional review board statement: The study protocol was reviewed and approved by the Ethics Committees of the participant centers.
Informed consent statement: All study participants provided written informed consent prior to study enrollment.
Conflict-of-interest statement: Parra RS has received fees for serving as a speaker and/or an advisory board member for AbbVie, Ferring Pharmaceuticals, Janssen, UCB Pharma and Takeda. Saad-Hossne R has received fees for serving as a speaker for AbbVie, Janssen, Pfizer and Takeda. Miszputen S has received fees for serving as a speaker and/or a consultant for Farmoquimica, Janssen and Marjan. He has received research funding from Ache, Roche and Takeda. Fernandes M is an employee of Eurotrials, now part of CTI, a CRO that provides services for pharmaceutical laboratories. Catapani WR has received fees for serving as a speaker and/or an advisory board member for Janssen and Takeda. Sassaki LY has received fees for serving as a speaker for AbbVie and Takeda. Gomes TNF has received research funding from Coordenacao de Aperfeicoamento de Pessoal de Nivel Superior (CAPES) and Takeda. She has received fees for serving as a speaker for Janssen. Chebli JMF has received fees for serving as a speaker for AbbVie, Janssen, UCB Pharma and Takeda. Senra JT and Caratin RF are employees of Takeda Pharmaceuticals Brazil. Nones RB has received fees for serving as a speaker for AbbVie, Ferring Pharmaceuticals, Janssen, Nestle, Novartis, Pfizer, UCB Pharma and Takeda. Parente JML has received fees for serving as a speaker for Takeda. Ferrari MLA has received fees for serving as a speaker and/or advisory board member for AbbVie, Ferring Pharmaceuticals, Janssen, UCB Pharma, and Takeda. Santana GO has received fees for serving as a speaker for Takeda, AbbVie, Janssen, and UCB Pharma. She has received research funding from Celgene and Roche. She has received fees for serving as an advisory board member for Janssen. Rocha JJR has received fees for serving as a speaker for Nestle. Feitosa MR has received fees for serving as a speaker for AbbVie and Janssen. Scotton AS has received fees for serving as a speaker for Janssen, Novartis, AbbVie, MSD, and EMS. He has received research funding from Janssen, Novartis, AbbVie, Roche, Pfizer, Bristol, Lilly, Novo Nordisk, Anthera, AstraZeneca, GSK, UCB, Sanofi, Takeda, Parexel, IQVIA, PPD, PRA, ICON, INP Research, Covance, and In Trials. Flores C has received fees for serving as a speaker for Janssen, Takeda, and AbbVie. She has received fees for serving as an advisory board member for Janssen. Zaltman C has received fees for serving as a speaker for UCB, Janssen, Takeda, and AbbVie. She has received research funding from AbbVie, Takeda, and Janssen. Bafutto M has received fees for serving as a speaker for Takeda, AbbVie, Janssen, UCB and Farmoquimica. He has received fees for serving as an advisory board member for AbbVie and Janssen. No conflict-of-interest: Omar Feres, Murilo Moura Lima, Roberto Luiz Kaiser Junior, Carolina Dias Gonçalves, Stella Cristina Silva de Souza, Anderson Antonio de Faria, Isabella de Miranda Guimaraes, Heda Maria Barska dos Santos Amarante, Mikaell Alexandre Gouvea Faria, Odery Ramos Junior.
Data sharing statement: No additional data are available.
STROBE statement: The authors have read the STROBE Statement-checklist of items, and the manuscript was prepared and revised according to the STROBE Statement-checklist of items.
Open-Access: This article is an open-access article which was selected by an in-house editor and fully peer-reviewed by external reviewers. It is distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/
Corresponding author: Rogerio Serafim Parra, MD, PhD, Assistant Professor, Department of Surgery and Anatomy, Ribeirao Preto Medical School, University of Sao Paulo, Ribeirao Preto, SP 14049-900, Brazil. rsparra@hcrp.usp.br
Telephone: +55-16-36022509
Received: June 12, 2019
Peer-review started: June 12, 2019
First decision: July 22, 2019
Revised: August 30, 2019
Accepted: September 13, 2019
Article in press: September 13, 2019
Published online: October 14, 2019
ARTICLE HIGHLIGHTS
Research background

Inflammatory bowel diseases (IBD) have been associated with a low quality of life (QoL) and a negative impact on work productivity compared to the general population, across several world regions.

Research motivation

Information about the impact of IBD on QoL and work productivity in Latin American countries is scarce and, in Brazil, emerges mostly from single-center studies. It is important to describe IBD control, patient-reported outcomes (PROs), treatment patterns and use of healthcare resources, so that clinicians and health services can optimize IBD management.

Research objectives

To describe QoL and work productivity and activity impairment (WPAI), treatment patterns and use of healthcare resources among IBD patients in Brazil. The association of disease activity with these outcomes was also evaluated.

Research methods

We conducted a multicenter cross-sectional study in several Brazilian IBD centers, with adult IBD outpatients, with clinical evaluation of disease activity at enrolment, chart review of the previous 3-years for collection of treatment and healthcare use, and an extensive collection of PROs, namely: General measures of QoL such as short-form 36 and EQ-5D-5L questionnaires, the Inflammatory and Bowel Disease Questionnaire (IBDQ, a disease-specific QoL measure) and the WPAI questionnaire.

Research results

In a large sample (n = 407) of patients with ulcerative colitis (n = 143) or Crohn’s disease (n = 264), almost half of CD patients (44.7%) and about a quarter of UC patients (25.2%) presented active disease at baseline. Irrespective of IBD type, QoL scores (SF-36, EQ-5D and IBDQ) were low. Disease activity, female gender, unemployment, and lower education and income were associated with a poorer QoL. IBD patients with active disease had a median IBDQ score 16 points higher (i.e., power QoL) than patients with mild or no disease activity, as well as in SF-36 summary measures (more than 2 points of difference) and EQ-VAS scores (more than 8 points). In our study, patients had approximately 30% impaired worktime, with approximately 12% absenteeism and 18%-24% presenteeism, and approximately 36%-40% total activity impairment. Patients with active IBD showed higher total activity impairment. With regard to use of healthcare resources, approximately one-quarter of CD patients had at least one surgery during the last 3 years. The proportion of UC patients with previous surgeries was considerably smaller (3%), but approximately 30% underwent a high-cost colectomy. Almost half of CD patients and approximately 35% of UC patients had at least one previous hospitalization. Almost all IBD patients were on some form of treatment at baseline, mainly with immunosuppressants and biologics among CD patients and with 5-ASA compounds in UC patients.

Research conclusions

Active IBD, especially among CD patients, is associated with a substantial impact on QoL, work productivity impairment and an increased number of IBD surgeries and hospitalizations in Brazil. This is particularly relevant due to the large proportion of IBD patients with active disease at enrolment and to the increase of IBD prevalence, suggesting the need to improve treatment but also the social support and follow-up of IBD patients in Brazil.

Research perspectives

Future research should address the evolution of PROs and its association with treatment changes and control of IBD activity, in a cohort of newly diagnosed patients in Brazil.